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DMSO and Turmeric/curcumin

Forums Cutaneous Melanoma Community DMSO and Turmeric/curcumin

  • Post
    camping_mama
    Participant

      Hi all,

      New to the melanoma world, with a 7 year old daughter diagnosed about 3 weeks ago.  (T1b, wide exsision and SLNB completed, awaiting results of SLNB).

      Have any of you had experience with DMSO and turmeric/curcumin.  I have read a lot about the anti-cancer aspects of curcumin, but many also report that it is difficult to assimilate significant amounts through the diet.

      My thought is dissolving in DMSO and rubbing near the area of the primary tumor and possibly the lymph basins.  (DMSO takes anything dissolved in it directly into the skin and cells).  I realize that DMSO isn't "approved" for this use, but it seems that the minor risks could be offset by the cancer fighting benefits.  

      Anyone tried it?  Thoughts?

      http://www.mdanderson.org/newsroom/news-releases/2005/07-11-05-potent-spice-works-to-block-growth-of-melanoma-in-lab-test-news-release.html (one of many reports on the tumor inhibiting quality of turmeric).

       

       

       

       

    Viewing 17 reply threads
    • Replies
        tcell
        Participant

          Hi,

          As far as I read from your last post your daughter's melanoma has been caught at a fairly early stage which is good. Still shocked and very sorry though that a child of that age can be affected by it at all.

          I was diagnosed stage IV in February out of the blue with lots of mets in my body and I have also come accresso turmeric. It was also recommended to me by my compelementary medicine specialist. I would be taking it today if I had not found out that it interferes with the BRAF / MEK inhibitors I am taking.

          So here is what I know:

          – It is hard to eat a sufficient amount of turmeric per day
          – In order for it to be opened up for your metabolism you need black pepper with it.
          – The best way to take it are capsules that can be ordered (at least here in Europe) that contain both, tumeric and black pepper in a sufficient daily amount. I do not know about the size of the capsules and dosage for children.
          – The way it works is basically that it is kind of antiseptic. Melanoma will create a sepsis around its cells, turmeric is supposed ot mitigate this sepsis and thus sabotage tumor growth.
          – I have never heard of the application of turmeric to the skin and do not think that this makes sense but personally I would refrain from doing any experiments of this kind.

          I know that this is a very hard time for you but your daughter has a good chance that melanoma will never return. Of course a lot will depend on the results you are wating for! In any case I would not rub anything near the primary tumor!

            camping_mama
            Participant

              Hi, thank you for your response and so sorry about your diagnosis!  

              Yes, I have seen that turmeric is contraindicated if you are having chemo or immunotherapy.  (yet another piece of evidence that it really does influence the body, though!)

              I wonder however, for those with only surgical treatment so far, like my daughter, if there is any real risk in trying it.  Turmeric has been studied extensively and has been found to have anti-cancer properties and basically no primary risk.  DMSO has some small risk associated with it, but not for cancer (some issues in the eyes, and at stronger doses than I would consider.)  So, though I do understnad hesitation to put anything near a primary melanoma, we put other "chemicals" on them (sunscreen included).  If DMSO is at best neutral and curcumin is anti-cancer, it seems worth the risk. 

              Has anyone actually tried it?

              Just for more background, this is another study (though done in rats and in vitro) here curcumin was used with DMSO and good results were found (this was squamous cell carcinoma not melanoma in this particular study). http://clincancerres.aacrjournals.org/content/14/19/6228.full 

               

               

               

              joelcairo
              Participant

                If anybody is still reading this thread, I just looked at the study posted above and in it the curcumin was mixed with DMSO and injected into mice.

                Here is the result: "Blood collected from the DMSO curcumin–injected mice was orange in color, reflecting the lysis [killing] of RBC [red blood cells]. This indicated toxicity of DMSO to circulating RBC."

                Curcumin is a great thing, but if you want maximum absorption and bioactivity, look for "Meriva" or "Theracurmin" formulations. DMSO seems dubious at best.

                 

                JC
                Participant

                  so is it a waste to take the capsule supplements?  they are expensive

                  joelcairo
                  Participant

                    Meriva and Theracurmin are capsule supplements, extremely bioavailable, and they're not too expensive if you buy them from online retailers such as Vitacost and Swanson. The curcumin with piperine is good too. Probably not as bioavailable but cheaper, so it balances out.

                    I was mainly posting about the DMSO. Its use is unnecessary, and probably wouldn't work if applied topically. Also it appears like it may have toxic effects if ingested.

                     

                    joelcairo
                    Participant

                      One more thing… I would not recommend using high quantities of curcumin (or any high-purity nutrient) for a 7-year-old. Not unless the cancer returned and the situation was dire.

                      That's because many anticancer substances work by suppressing growth hormone signaling, cell division, and so on. Processes that will continue to be important to your daughter's normal development for at least a decade. There is really no way of knowing what the effects would be.

                      As for how much is appropriate, try Googling the subject and getting advice from some respected sources.

                      However getting lots of phytonutrients from fruits, berries, vegetables, nuts, spices and so on is an excellent idea.

                      I have one daughter who loves all these food groups, and another who grew up insisting on Happy Meals and macaroni and cheese, and there wasn't a darn thing I could do about it, so good health to her and good luck to you. 🙂

                       

                      joelcairo
                      Participant

                        One more thing… I would not recommend using high quantities of curcumin (or any high-purity nutrient) for a 7-year-old. Not unless the cancer returned and the situation was dire.

                        That's because many anticancer substances work by suppressing growth hormone signaling, cell division, and so on. Processes that will continue to be important to your daughter's normal development for at least a decade. There is really no way of knowing what the effects would be.

                        As for how much is appropriate, try Googling the subject and getting advice from some respected sources.

                        However getting lots of phytonutrients from fruits, berries, vegetables, nuts, spices and so on is an excellent idea.

                        I have one daughter who loves all these food groups, and another who grew up insisting on Happy Meals and macaroni and cheese, and there wasn't a darn thing I could do about it, so good health to her and good luck to you. 🙂

                         

                        joelcairo
                        Participant

                          One more thing… I would not recommend using high quantities of curcumin (or any high-purity nutrient) for a 7-year-old. Not unless the cancer returned and the situation was dire.

                          That's because many anticancer substances work by suppressing growth hormone signaling, cell division, and so on. Processes that will continue to be important to your daughter's normal development for at least a decade. There is really no way of knowing what the effects would be.

                          As for how much is appropriate, try Googling the subject and getting advice from some respected sources.

                          However getting lots of phytonutrients from fruits, berries, vegetables, nuts, spices and so on is an excellent idea.

                          I have one daughter who loves all these food groups, and another who grew up insisting on Happy Meals and macaroni and cheese, and there wasn't a darn thing I could do about it, so good health to her and good luck to you. 🙂

                           

                          Dillreelsvegas
                          Participant

                            Joel, it sounds like you know very little about DMSO. DMSO is quite the opposite of toxic, I injest it daily, and there are huge benefits in applying topically to penetrate the skin. Sounds like you are giving advice about something you know nothing about that can possibly help someone. I highly reccomend DMSO. 

                            Dillreelsvegas
                            Participant

                              Joel, it sounds like you know very little about DMSO. DMSO is quite the opposite of toxic, I injest it daily, and there are huge benefits in applying topically to penetrate the skin. Sounds like you are giving advice about something you know nothing about that can possibly help someone. I highly reccomend DMSO. 

                              joelcairo
                              Participant

                                Meriva and Theracurmin are capsule supplements, extremely bioavailable, and they're not too expensive if you buy them from online retailers such as Vitacost and Swanson. The curcumin with piperine is good too. Probably not as bioavailable but cheaper, so it balances out.

                                I was mainly posting about the DMSO. Its use is unnecessary, and probably wouldn't work if applied topically. Also it appears like it may have toxic effects if ingested.

                                 

                                joelcairo
                                Participant

                                  Meriva and Theracurmin are capsule supplements, extremely bioavailable, and they're not too expensive if you buy them from online retailers such as Vitacost and Swanson. The curcumin with piperine is good too. Probably not as bioavailable but cheaper, so it balances out.

                                  I was mainly posting about the DMSO. Its use is unnecessary, and probably wouldn't work if applied topically. Also it appears like it may have toxic effects if ingested.

                                   

                                  JC
                                  Participant

                                    so is it a waste to take the capsule supplements?  they are expensive

                                    JC
                                    Participant

                                      so is it a waste to take the capsule supplements?  they are expensive

                                      joelcairo
                                      Participant

                                        If anybody is still reading this thread, I just looked at the study posted above and in it the curcumin was mixed with DMSO and injected into mice.

                                        Here is the result: "Blood collected from the DMSO curcumin–injected mice was orange in color, reflecting the lysis [killing] of RBC [red blood cells]. This indicated toxicity of DMSO to circulating RBC."

                                        Curcumin is a great thing, but if you want maximum absorption and bioactivity, look for "Meriva" or "Theracurmin" formulations. DMSO seems dubious at best.

                                         

                                        joelcairo
                                        Participant

                                          If anybody is still reading this thread, I just looked at the study posted above and in it the curcumin was mixed with DMSO and injected into mice.

                                          Here is the result: "Blood collected from the DMSO curcumin–injected mice was orange in color, reflecting the lysis [killing] of RBC [red blood cells]. This indicated toxicity of DMSO to circulating RBC."

                                          Curcumin is a great thing, but if you want maximum absorption and bioactivity, look for "Meriva" or "Theracurmin" formulations. DMSO seems dubious at best.

                                           

                                          dereks6776
                                          Participant
                                            I think all the comments about dmso are nonsense. People dont do quality research. There can be cleansing reactions from dmso, so starting with a low dose is advisable. Just because theres a cleansing reaction doesnt make it toxic. Dmso has been proven to be as safe as water. Curcumin with dmso makes sense to me. Also, there has been research on getting great results for melanoma with the combinatuon of dmso and vitamin c(potasium ascorbate). Please research this and i really hope your child gets better. (:
                                            dereks6776
                                            Participant
                                              I think all the comments about dmso are nonsense. People dont do quality research. There can be cleansing reactions from dmso, so starting with a low dose is advisable. Just because theres a cleansing reaction doesnt make it toxic. Dmso has been proven to be as safe as water. Curcumin with dmso makes sense to me. Also, there has been research on getting great results for melanoma with the combinatuon of dmso and vitamin c(potasium ascorbate). Please research this and i really hope your child gets better. (:
                                              dereks6776
                                              Participant
                                                I think all the comments about dmso are nonsense. People dont do quality research. There can be cleansing reactions from dmso, so starting with a low dose is advisable. Just because theres a cleansing reaction doesnt make it toxic. Dmso has been proven to be as safe as water. Curcumin with dmso makes sense to me. Also, there has been research on getting great results for melanoma with the combinatuon of dmso and vitamin c(potasium ascorbate). Please research this and i really hope your child gets better. (:
                                                camping_mama
                                                Participant

                                                  Hi, thank you for your response and so sorry about your diagnosis!  

                                                  Yes, I have seen that turmeric is contraindicated if you are having chemo or immunotherapy.  (yet another piece of evidence that it really does influence the body, though!)

                                                  I wonder however, for those with only surgical treatment so far, like my daughter, if there is any real risk in trying it.  Turmeric has been studied extensively and has been found to have anti-cancer properties and basically no primary risk.  DMSO has some small risk associated with it, but not for cancer (some issues in the eyes, and at stronger doses than I would consider.)  So, though I do understnad hesitation to put anything near a primary melanoma, we put other "chemicals" on them (sunscreen included).  If DMSO is at best neutral and curcumin is anti-cancer, it seems worth the risk. 

                                                  Has anyone actually tried it?

                                                  Just for more background, this is another study (though done in rats and in vitro) here curcumin was used with DMSO and good results were found (this was squamous cell carcinoma not melanoma in this particular study). http://clincancerres.aacrjournals.org/content/14/19/6228.full 

                                                   

                                                   

                                                   

                                                  camping_mama
                                                  Participant

                                                    Hi, thank you for your response and so sorry about your diagnosis!  

                                                    Yes, I have seen that turmeric is contraindicated if you are having chemo or immunotherapy.  (yet another piece of evidence that it really does influence the body, though!)

                                                    I wonder however, for those with only surgical treatment so far, like my daughter, if there is any real risk in trying it.  Turmeric has been studied extensively and has been found to have anti-cancer properties and basically no primary risk.  DMSO has some small risk associated with it, but not for cancer (some issues in the eyes, and at stronger doses than I would consider.)  So, though I do understnad hesitation to put anything near a primary melanoma, we put other "chemicals" on them (sunscreen included).  If DMSO is at best neutral and curcumin is anti-cancer, it seems worth the risk. 

                                                    Has anyone actually tried it?

                                                    Just for more background, this is another study (though done in rats and in vitro) here curcumin was used with DMSO and good results were found (this was squamous cell carcinoma not melanoma in this particular study). http://clincancerres.aacrjournals.org/content/14/19/6228.full 

                                                     

                                                     

                                                     

                                                  tcell
                                                  Participant

                                                    Hi,

                                                    As far as I read from your last post your daughter's melanoma has been caught at a fairly early stage which is good. Still shocked and very sorry though that a child of that age can be affected by it at all.

                                                    I was diagnosed stage IV in February out of the blue with lots of mets in my body and I have also come accresso turmeric. It was also recommended to me by my compelementary medicine specialist. I would be taking it today if I had not found out that it interferes with the BRAF / MEK inhibitors I am taking.

                                                    So here is what I know:

                                                    – It is hard to eat a sufficient amount of turmeric per day
                                                    – In order for it to be opened up for your metabolism you need black pepper with it.
                                                    – The best way to take it are capsules that can be ordered (at least here in Europe) that contain both, tumeric and black pepper in a sufficient daily amount. I do not know about the size of the capsules and dosage for children.
                                                    – The way it works is basically that it is kind of antiseptic. Melanoma will create a sepsis around its cells, turmeric is supposed ot mitigate this sepsis and thus sabotage tumor growth.
                                                    – I have never heard of the application of turmeric to the skin and do not think that this makes sense but personally I would refrain from doing any experiments of this kind.

                                                    I know that this is a very hard time for you but your daughter has a good chance that melanoma will never return. Of course a lot will depend on the results you are wating for! In any case I would not rub anything near the primary tumor!

                                                    tcell
                                                    Participant

                                                      Hi,

                                                      As far as I read from your last post your daughter's melanoma has been caught at a fairly early stage which is good. Still shocked and very sorry though that a child of that age can be affected by it at all.

                                                      I was diagnosed stage IV in February out of the blue with lots of mets in my body and I have also come accresso turmeric. It was also recommended to me by my compelementary medicine specialist. I would be taking it today if I had not found out that it interferes with the BRAF / MEK inhibitors I am taking.

                                                      So here is what I know:

                                                      – It is hard to eat a sufficient amount of turmeric per day
                                                      – In order for it to be opened up for your metabolism you need black pepper with it.
                                                      – The best way to take it are capsules that can be ordered (at least here in Europe) that contain both, tumeric and black pepper in a sufficient daily amount. I do not know about the size of the capsules and dosage for children.
                                                      – The way it works is basically that it is kind of antiseptic. Melanoma will create a sepsis around its cells, turmeric is supposed ot mitigate this sepsis and thus sabotage tumor growth.
                                                      – I have never heard of the application of turmeric to the skin and do not think that this makes sense but personally I would refrain from doing any experiments of this kind.

                                                      I know that this is a very hard time for you but your daughter has a good chance that melanoma will never return. Of course a lot will depend on the results you are wating for! In any case I would not rub anything near the primary tumor!

                                                      JerryfromFauq
                                                      Participant

                                                        i have been taking curcumin (turmeric extract = 95% curcumin) with peperine which greatly aids the bodies absorbtion of the curcumin for 5 years along with my targeted chemo..  I know of people taking 500 to 3000 units a day.  My innumerable tumers have been stable for this time.

                                                        JerryfromFauq
                                                        Participant

                                                          i have been taking curcumin (turmeric extract = 95% curcumin) with peperine which greatly aids the bodies absorbtion of the curcumin for 5 years along with my targeted chemo..  I know of people taking 500 to 3000 units a day.  My innumerable tumers have been stable for this time.

                                                          JerryfromFauq
                                                          Participant

                                                            i have been taking curcumin (turmeric extract = 95% curcumin) with peperine which greatly aids the bodies absorbtion of the curcumin for 5 years along with my targeted chemo..  I know of people taking 500 to 3000 units a day.  My innumerable tumers have been stable for this time.

                                                            POW
                                                            Participant

                                                              Do not do it!! You have no idea what unanticipated side effects may result. As you say, DMSO promotes transporting almost anything through the skin and into internal organs. Turmeric is a very complex mixture of compounds– mixing turmeric with DMSO and applying it to the skin will promote the absorption of lots of stuff into the body. Bad news! Even if you start with purified curcumin, who's to say how "pure" is purified and how damaging the remaining contaminants could be if deliberately absorbed through the skin. 

                                                              DMSO is NOT harmelss. You have no idea what damage you could be doing when you mix a complex spice ("purified" or not) with DMSO and apply it to  the skin. And how often? Every day? Several times a day? For months or years? If you want to experiment on yourself, go right ahead. But do not do this to an innocent, helpless child.

                                                                camping_mama
                                                                Participant

                                                                  Hi.  I understand your position, but, as I hope you can appreciate, I have one singular goal right now: to make sure that this cancer that is inside my daughter is stopped in its tracks as soon as possible.  I agree, DMSO is not harmless, but neither is chemo, neither is a lifetime of CT scans, and neither is metastasis.  

                                                                  I do appreciate taking a conservative approach, but something about this post really hit me in the wrong (sensitive) place.   To suggest to a mother who has nothing, asolutely nothing more important to her than her own child to "not to this to an innocent, helpless child" was really unnecesary and thoughtless, and I am guessing not based on thorough research.  I am not jumping blindly into something without research.

                                                                  Both DMSO and curcumin have been researched exetensively and I am a very careful, educated person who is reading everything I can find on the subject. No it might not be part of the protocol (yet) but I am not going to ignore it as an option just because of that.

                                                                  I am not something from which my innocent helpless child needs protection.  I am here to help her through this using every tool available to me.

                                                                   

                                                                   

                                                                  JC
                                                                  Participant

                                                                    hopefully there is no more cancer inside her to worry about stopping in its tracks. . hopefully all of it was gone with the biopsy

                                                                    camping_mama
                                                                    Participant

                                                                      Yes, hopefully.  Hopefully, hopefully!!!  

                                                                      camping_mama
                                                                      Participant

                                                                        Yes, hopefully.  Hopefully, hopefully!!!  

                                                                        camping_mama
                                                                        Participant

                                                                          Yes, hopefully.  Hopefully, hopefully!!!  

                                                                          JC
                                                                          Participant

                                                                            hopefully there is no more cancer inside her to worry about stopping in its tracks. . hopefully all of it was gone with the biopsy

                                                                            JC
                                                                            Participant

                                                                              hopefully there is no more cancer inside her to worry about stopping in its tracks. . hopefully all of it was gone with the biopsy

                                                                              kylez
                                                                              Participant

                                                                                Glad you're coming here and asking questions! I understand the impulse of wanting an edge, any edge, on this disease.

                                                                                At stage 4 and not on any treatment (after surgery and Yervoy), I tried out a bunch of some concentrated suppements (ginger, broccoli sprouts, rieshi mushrooms, tumeric, etc.) The biggest short-term effect I felt was headaches from the broccoli sprouts! As I read more I wasn't thrilled about the blood thinning properties of many of them. Looking for an extra edge is almost inevitable I think.

                                                                                Now, outside of melanoma treatments like Yervoy, I put my trust in exercise, sleep, and balanced diet. And good sun protection, which I imagine is hard on kids in schools.

                                                                                Hope that helps. 

                                                                                Teddyleigh
                                                                                Participant

                                                                                  You are correct that all of these supplements can thin the blood, so if you’re worried ask your doctor to check your pt/ptt. It’s a blood test that tests how thin your blood is (they usually order it before surgery). I recently added a lot of supplements to my diet, including flax seed and flax seed oil, which are known to thin the blood, and my pt/ptt came back normal. I’m just making sure to spread them out throughout the day, so I’m not taking too many supplements at once. 

                                                                                  kylez
                                                                                  Participant

                                                                                    Glad you're coming here and asking questions! I understand the impulse of wanting an edge, any edge, on this disease.

                                                                                    At stage 4 and not on any treatment (after surgery and Yervoy), I tried out a bunch of some concentrated suppements (ginger, broccoli sprouts, rieshi mushrooms, tumeric, etc.) The biggest short-term effect I felt was headaches from the broccoli sprouts! As I read more I wasn't thrilled about the blood thinning properties of many of them. Looking for an extra edge is almost inevitable I think.

                                                                                    Now, outside of melanoma treatments like Yervoy, I put my trust in exercise, sleep, and balanced diet. And good sun protection, which I imagine is hard on kids in schools.

                                                                                    Hope that helps. 

                                                                                    kylez
                                                                                    Participant

                                                                                      Glad you're coming here and asking questions! I understand the impulse of wanting an edge, any edge, on this disease.

                                                                                      At stage 4 and not on any treatment (after surgery and Yervoy), I tried out a bunch of some concentrated suppements (ginger, broccoli sprouts, rieshi mushrooms, tumeric, etc.) The biggest short-term effect I felt was headaches from the broccoli sprouts! As I read more I wasn't thrilled about the blood thinning properties of many of them. Looking for an extra edge is almost inevitable I think.

                                                                                      Now, outside of melanoma treatments like Yervoy, I put my trust in exercise, sleep, and balanced diet. And good sun protection, which I imagine is hard on kids in schools.

                                                                                      Hope that helps. 

                                                                                      Teddyleigh
                                                                                      Participant

                                                                                        I was wondering how your daughter is doing now, and if you ended up trying the DMSO and turmeric mixture? I was thinking about making a DMSO, colloidal silver, and vitamin C mixture to put on the cancer on my skin. 

                                                                                         

                                                                                        I hooe your daughter is healing well 🙂

                                                                                        camping_mama
                                                                                        Participant

                                                                                          Hi.  I understand your position, but, as I hope you can appreciate, I have one singular goal right now: to make sure that this cancer that is inside my daughter is stopped in its tracks as soon as possible.  I agree, DMSO is not harmless, but neither is chemo, neither is a lifetime of CT scans, and neither is metastasis.  

                                                                                          I do appreciate taking a conservative approach, but something about this post really hit me in the wrong (sensitive) place.   To suggest to a mother who has nothing, asolutely nothing more important to her than her own child to "not to this to an innocent, helpless child" was really unnecesary and thoughtless, and I am guessing not based on thorough research.  I am not jumping blindly into something without research.

                                                                                          Both DMSO and curcumin have been researched exetensively and I am a very careful, educated person who is reading everything I can find on the subject. No it might not be part of the protocol (yet) but I am not going to ignore it as an option just because of that.

                                                                                          I am not something from which my innocent helpless child needs protection.  I am here to help her through this using every tool available to me.

                                                                                           

                                                                                           

                                                                                          camping_mama
                                                                                          Participant

                                                                                            Hi.  I understand your position, but, as I hope you can appreciate, I have one singular goal right now: to make sure that this cancer that is inside my daughter is stopped in its tracks as soon as possible.  I agree, DMSO is not harmless, but neither is chemo, neither is a lifetime of CT scans, and neither is metastasis.  

                                                                                            I do appreciate taking a conservative approach, but something about this post really hit me in the wrong (sensitive) place.   To suggest to a mother who has nothing, asolutely nothing more important to her than her own child to "not to this to an innocent, helpless child" was really unnecesary and thoughtless, and I am guessing not based on thorough research.  I am not jumping blindly into something without research.

                                                                                            Both DMSO and curcumin have been researched exetensively and I am a very careful, educated person who is reading everything I can find on the subject. No it might not be part of the protocol (yet) but I am not going to ignore it as an option just because of that.

                                                                                            I am not something from which my innocent helpless child needs protection.  I am here to help her through this using every tool available to me.

                                                                                             

                                                                                             

                                                                                          POW
                                                                                          Participant

                                                                                            Do not do it!! You have no idea what unanticipated side effects may result. As you say, DMSO promotes transporting almost anything through the skin and into internal organs. Turmeric is a very complex mixture of compounds– mixing turmeric with DMSO and applying it to the skin will promote the absorption of lots of stuff into the body. Bad news! Even if you start with purified curcumin, who's to say how "pure" is purified and how damaging the remaining contaminants could be if deliberately absorbed through the skin. 

                                                                                            DMSO is NOT harmelss. You have no idea what damage you could be doing when you mix a complex spice ("purified" or not) with DMSO and apply it to  the skin. And how often? Every day? Several times a day? For months or years? If you want to experiment on yourself, go right ahead. But do not do this to an innocent, helpless child.

                                                                                            POW
                                                                                            Participant

                                                                                              Do not do it!! You have no idea what unanticipated side effects may result. As you say, DMSO promotes transporting almost anything through the skin and into internal organs. Turmeric is a very complex mixture of compounds– mixing turmeric with DMSO and applying it to the skin will promote the absorption of lots of stuff into the body. Bad news! Even if you start with purified curcumin, who's to say how "pure" is purified and how damaging the remaining contaminants could be if deliberately absorbed through the skin. 

                                                                                              DMSO is NOT harmelss. You have no idea what damage you could be doing when you mix a complex spice ("purified" or not) with DMSO and apply it to  the skin. And how often? Every day? Several times a day? For months or years? If you want to experiment on yourself, go right ahead. But do not do this to an innocent, helpless child.

                                                                                              Janner
                                                                                              Participant

                                                                                                I guess my question is really why?  Why do something experimental on a small child when surgical removal has been shown to be basically curative?   Tumeric hasn't been studied in this manner for melanoma.  I'd just wait for the SNB results.  If negative, as expected, then live life!  I've had 2 stage 1B primaries deeper than your daughters and am still here 22 years later, still stage 1B.  Most experiments of this type are done in a controlled setting, using controlled ingredients, controlled amounts and a scientific approach.  Can you provide that?  I'm all about doing complementary stuff if that makes you feel empowered and in control of something that we can't control, but this doesn't strike me as complementary, this is just "experimenting" and wishful thinking.  BTW, I responded on your other thread about emailing me to put you in touch with a pediatric melanoma group on FB, but I never received your email.

                                                                                                  camping_mama
                                                                                                  Participant

                                                                                                    Hi. I sent the email through the melanoma interface. I wonder if it didn't work.  I will send again.  thank you for following up!

                                                                                                    camping_mama
                                                                                                    Participant

                                                                                                      Hi.  I guess the reason "why" is that "basically curative" isn't good enough for her.  She is only 7, the melanoma has a whole lifetime to find a way to rear its head again in her.  If it can be eradicated now, I want to find out if there are ways to do it.  Curcumin has been found to be safe even in extremely large doses.  Many people report using DMSO /turmeric rubs for things as innocuous as tennis elbow and sprains and DMSO is used widely in Europe.  Again, I would never do anything foolhearty or that would put my child at greater risk.  But there is unquestionably a risk to NOT trying to kill the melanoma that may still be lingering in her, even if the SLNB is negative.

                                                                                                      All of that said, I would not do it unless and until I can find out how much, how often, etc. that clinical trials suggest is the right dosage and that I receive the ok from her doctor.

                                                                                                       

                                                                                                      janandben
                                                                                                      Participant

                                                                                                        In response to surgery being basically curative…. One could hope.  My husband had surgery to remove a mole at the age of 22 and was stage T1b as well.  Slnb was negative and routine chest X-rays and blood work were carried out for the next 6 years at md Anderson.  We thought he was "cured" by surgery and lived life.  At the age of 31 he has stage 4 melanoma to brain, bones, liver ect.  It doesn't matter what stage and how early you catch melanoma, there is always a chance for its return.  This mother is asking if any of us have used tummeric with success.  She's not going to poison her 7 year old.  There is no treatment except for surgery for stage t1b…. But nutrition can help build the immune system.  I asked about tummeric when my husband was first diagnosed, but the drs shrugged it off at md Anderson.  Their reason being we wouldn't be able to get the high quantity daily needed for it to be effective.  This post wasn't to scare you I just wanted you to know what we went through, and I would be doing the exact same thing as you if it were my daughter.  I have a 7 year old daughter as well and hope you get the results quickly!! Waiting is the worst!!

                                                                                                        JC
                                                                                                        Participant

                                                                                                          I'd say it does matter what stage and how early you catch melanoma.  That is the whole thing – early detection to reduce any chance of return.

                                                                                                           

                                                                                                           

                                                                                                           

                                                                                                          janandben
                                                                                                          Participant

                                                                                                            Of course the earlier the better to detect melanoma for a chance it won't return, but I was trying to state that there is no safe stage for getting diagnosed with melanoma.  Any stage has a chance for recurrance even when you do detect it very early on.  I think that is where many of our friends and people in general take skin cancer lightly because they say "just get it cut off and you are fine."  

                                                                                                            JC
                                                                                                            Participant

                                                                                                              there is no guarantee of safety in most things I guess anyway; driving, boating, etc.

                                                                                                              JC
                                                                                                              Participant

                                                                                                                there is no guarantee of safety in most things I guess anyway; driving, boating, etc.

                                                                                                                JC
                                                                                                                Participant

                                                                                                                  there is no guarantee of safety in most things I guess anyway; driving, boating, etc.

                                                                                                                  janandben
                                                                                                                  Participant

                                                                                                                    Of course the earlier the better to detect melanoma for a chance it won't return, but I was trying to state that there is no safe stage for getting diagnosed with melanoma.  Any stage has a chance for recurrance even when you do detect it very early on.  I think that is where many of our friends and people in general take skin cancer lightly because they say "just get it cut off and you are fine."  

                                                                                                                    janandben
                                                                                                                    Participant

                                                                                                                      Of course the earlier the better to detect melanoma for a chance it won't return, but I was trying to state that there is no safe stage for getting diagnosed with melanoma.  Any stage has a chance for recurrance even when you do detect it very early on.  I think that is where many of our friends and people in general take skin cancer lightly because they say "just get it cut off and you are fine."  

                                                                                                                      JC
                                                                                                                      Participant

                                                                                                                        I'd say it does matter what stage and how early you catch melanoma.  That is the whole thing – early detection to reduce any chance of return.

                                                                                                                         

                                                                                                                         

                                                                                                                         

                                                                                                                        JC
                                                                                                                        Participant

                                                                                                                          I'd say it does matter what stage and how early you catch melanoma.  That is the whole thing – early detection to reduce any chance of return.

                                                                                                                           

                                                                                                                           

                                                                                                                           

                                                                                                                          Momrn5
                                                                                                                          Participant

                                                                                                                            I have read studies that say high doses of curcumin for a short period of time or low doses for a long length of time work equally as well.  Researchers are attributing the frequent regular ingestion of Tumeric as a diet staple to the lower incidence of many types of cancer in India.  Just food for thought.  I think it has a more cumulative effect taken over time.  I haven't gotten any decent discussion at all from my doctors relating to diet. In general, I think when they don't take a person's diet into consideration, they are doing a disservice to the patient.  

                                                                                                                            janandben
                                                                                                                            Participant

                                                                                                                              I agree any and every time we have brought up nutrition with our Drs they always shrug it off.  Even the nutritionists at the hospital aren't much help with giving nutrition advice in the way of supplements ect,  they just want to make sure you are consuming any type of calories whether it be Dairy Queen or salads!  It's a hard road to go when you don't get any support from the MD,  it's usually up to the patient to take charge of that route.  

                                                                                                                              janandben
                                                                                                                              Participant

                                                                                                                                I agree any and every time we have brought up nutrition with our Drs they always shrug it off.  Even the nutritionists at the hospital aren't much help with giving nutrition advice in the way of supplements ect,  they just want to make sure you are consuming any type of calories whether it be Dairy Queen or salads!  It's a hard road to go when you don't get any support from the MD,  it's usually up to the patient to take charge of that route.  

                                                                                                                                janandben
                                                                                                                                Participant

                                                                                                                                  I agree any and every time we have brought up nutrition with our Drs they always shrug it off.  Even the nutritionists at the hospital aren't much help with giving nutrition advice in the way of supplements ect,  they just want to make sure you are consuming any type of calories whether it be Dairy Queen or salads!  It's a hard road to go when you don't get any support from the MD,  it's usually up to the patient to take charge of that route.  

                                                                                                                                  Momrn5
                                                                                                                                  Participant

                                                                                                                                    I have read studies that say high doses of curcumin for a short period of time or low doses for a long length of time work equally as well.  Researchers are attributing the frequent regular ingestion of Tumeric as a diet staple to the lower incidence of many types of cancer in India.  Just food for thought.  I think it has a more cumulative effect taken over time.  I haven't gotten any decent discussion at all from my doctors relating to diet. In general, I think when they don't take a person's diet into consideration, they are doing a disservice to the patient.  

                                                                                                                                    Momrn5
                                                                                                                                    Participant

                                                                                                                                      I have read studies that say high doses of curcumin for a short period of time or low doses for a long length of time work equally as well.  Researchers are attributing the frequent regular ingestion of Tumeric as a diet staple to the lower incidence of many types of cancer in India.  Just food for thought.  I think it has a more cumulative effect taken over time.  I haven't gotten any decent discussion at all from my doctors relating to diet. In general, I think when they don't take a person's diet into consideration, they are doing a disservice to the patient.  

                                                                                                                                      camping_mama
                                                                                                                                      Participant

                                                                                                                                        Thank you for your thoughttful response!  

                                                                                                                                        camping_mama
                                                                                                                                        Participant

                                                                                                                                          Thank you for your thoughttful response!  

                                                                                                                                          camping_mama
                                                                                                                                          Participant

                                                                                                                                            Thank you for your thoughttful response!  

                                                                                                                                            janandben
                                                                                                                                            Participant

                                                                                                                                              In response to surgery being basically curative…. One could hope.  My husband had surgery to remove a mole at the age of 22 and was stage T1b as well.  Slnb was negative and routine chest X-rays and blood work were carried out for the next 6 years at md Anderson.  We thought he was "cured" by surgery and lived life.  At the age of 31 he has stage 4 melanoma to brain, bones, liver ect.  It doesn't matter what stage and how early you catch melanoma, there is always a chance for its return.  This mother is asking if any of us have used tummeric with success.  She's not going to poison her 7 year old.  There is no treatment except for surgery for stage t1b…. But nutrition can help build the immune system.  I asked about tummeric when my husband was first diagnosed, but the drs shrugged it off at md Anderson.  Their reason being we wouldn't be able to get the high quantity daily needed for it to be effective.  This post wasn't to scare you I just wanted you to know what we went through, and I would be doing the exact same thing as you if it were my daughter.  I have a 7 year old daughter as well and hope you get the results quickly!! Waiting is the worst!!

                                                                                                                                              janandben
                                                                                                                                              Participant

                                                                                                                                                In response to surgery being basically curative…. One could hope.  My husband had surgery to remove a mole at the age of 22 and was stage T1b as well.  Slnb was negative and routine chest X-rays and blood work were carried out for the next 6 years at md Anderson.  We thought he was "cured" by surgery and lived life.  At the age of 31 he has stage 4 melanoma to brain, bones, liver ect.  It doesn't matter what stage and how early you catch melanoma, there is always a chance for its return.  This mother is asking if any of us have used tummeric with success.  She's not going to poison her 7 year old.  There is no treatment except for surgery for stage t1b…. But nutrition can help build the immune system.  I asked about tummeric when my husband was first diagnosed, but the drs shrugged it off at md Anderson.  Their reason being we wouldn't be able to get the high quantity daily needed for it to be effective.  This post wasn't to scare you I just wanted you to know what we went through, and I would be doing the exact same thing as you if it were my daughter.  I have a 7 year old daughter as well and hope you get the results quickly!! Waiting is the worst!!

                                                                                                                                                Janner
                                                                                                                                                Participant

                                                                                                                                                  If there were something out there that would really guarantee her future, we'd all be on top of it too!  There has been a lot of research out there.  Curcurmin has been studied at MD Anderson by Dr. Agarwahl (spelling).  Before you do anything, I'd talk to him.  Most people in her position NEVER deal with melanoma again.  And to date, there is no way to predict who will have a recurrence and who won't.   It's nice to think you have a guarantee, but I don't think you'll ever get that assurance whether you try something like this or not.

                                                                                                                                                  Janner
                                                                                                                                                  Participant

                                                                                                                                                    If there were something out there that would really guarantee her future, we'd all be on top of it too!  There has been a lot of research out there.  Curcurmin has been studied at MD Anderson by Dr. Agarwahl (spelling).  Before you do anything, I'd talk to him.  Most people in her position NEVER deal with melanoma again.  And to date, there is no way to predict who will have a recurrence and who won't.   It's nice to think you have a guarantee, but I don't think you'll ever get that assurance whether you try something like this or not.

                                                                                                                                                    Janner
                                                                                                                                                    Participant

                                                                                                                                                      If there were something out there that would really guarantee her future, we'd all be on top of it too!  There has been a lot of research out there.  Curcurmin has been studied at MD Anderson by Dr. Agarwahl (spelling).  Before you do anything, I'd talk to him.  Most people in her position NEVER deal with melanoma again.  And to date, there is no way to predict who will have a recurrence and who won't.   It's nice to think you have a guarantee, but I don't think you'll ever get that assurance whether you try something like this or not.

                                                                                                                                                      camping_mama
                                                                                                                                                      Participant

                                                                                                                                                        Hi.  I guess the reason "why" is that "basically curative" isn't good enough for her.  She is only 7, the melanoma has a whole lifetime to find a way to rear its head again in her.  If it can be eradicated now, I want to find out if there are ways to do it.  Curcumin has been found to be safe even in extremely large doses.  Many people report using DMSO /turmeric rubs for things as innocuous as tennis elbow and sprains and DMSO is used widely in Europe.  Again, I would never do anything foolhearty or that would put my child at greater risk.  But there is unquestionably a risk to NOT trying to kill the melanoma that may still be lingering in her, even if the SLNB is negative.

                                                                                                                                                        All of that said, I would not do it unless and until I can find out how much, how often, etc. that clinical trials suggest is the right dosage and that I receive the ok from her doctor.

                                                                                                                                                         

                                                                                                                                                        camping_mama
                                                                                                                                                        Participant

                                                                                                                                                          Hi.  I guess the reason "why" is that "basically curative" isn't good enough for her.  She is only 7, the melanoma has a whole lifetime to find a way to rear its head again in her.  If it can be eradicated now, I want to find out if there are ways to do it.  Curcumin has been found to be safe even in extremely large doses.  Many people report using DMSO /turmeric rubs for things as innocuous as tennis elbow and sprains and DMSO is used widely in Europe.  Again, I would never do anything foolhearty or that would put my child at greater risk.  But there is unquestionably a risk to NOT trying to kill the melanoma that may still be lingering in her, even if the SLNB is negative.

                                                                                                                                                          All of that said, I would not do it unless and until I can find out how much, how often, etc. that clinical trials suggest is the right dosage and that I receive the ok from her doctor.

                                                                                                                                                           

                                                                                                                                                          camping_mama
                                                                                                                                                          Participant

                                                                                                                                                            Hi. I sent the email through the melanoma interface. I wonder if it didn't work.  I will send again.  thank you for following up!

                                                                                                                                                            camping_mama
                                                                                                                                                            Participant

                                                                                                                                                              Hi. I sent the email through the melanoma interface. I wonder if it didn't work.  I will send again.  thank you for following up!

                                                                                                                                                            Janner
                                                                                                                                                            Participant

                                                                                                                                                              I guess my question is really why?  Why do something experimental on a small child when surgical removal has been shown to be basically curative?   Tumeric hasn't been studied in this manner for melanoma.  I'd just wait for the SNB results.  If negative, as expected, then live life!  I've had 2 stage 1B primaries deeper than your daughters and am still here 22 years later, still stage 1B.  Most experiments of this type are done in a controlled setting, using controlled ingredients, controlled amounts and a scientific approach.  Can you provide that?  I'm all about doing complementary stuff if that makes you feel empowered and in control of something that we can't control, but this doesn't strike me as complementary, this is just "experimenting" and wishful thinking.  BTW, I responded on your other thread about emailing me to put you in touch with a pediatric melanoma group on FB, but I never received your email.

                                                                                                                                                              Janner
                                                                                                                                                              Participant

                                                                                                                                                                I guess my question is really why?  Why do something experimental on a small child when surgical removal has been shown to be basically curative?   Tumeric hasn't been studied in this manner for melanoma.  I'd just wait for the SNB results.  If negative, as expected, then live life!  I've had 2 stage 1B primaries deeper than your daughters and am still here 22 years later, still stage 1B.  Most experiments of this type are done in a controlled setting, using controlled ingredients, controlled amounts and a scientific approach.  Can you provide that?  I'm all about doing complementary stuff if that makes you feel empowered and in control of something that we can't control, but this doesn't strike me as complementary, this is just "experimenting" and wishful thinking.  BTW, I responded on your other thread about emailing me to put you in touch with a pediatric melanoma group on FB, but I never received your email.

                                                                                                                                                                camping_mama
                                                                                                                                                                Participant

                                                                                                                                                                  Sigh.  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2682536/  There is a lot more for me to keep researching, but this is clearly a problem.  Central nervous system toxicity when injected in rats; assumed rsik to children's CNS.  This is injections and DMOS mixed with bone marrow, etc., but still. 🙁

                                                                                                                                                                  Reading, reading reading….

                                                                                                                                                                    Momrn5
                                                                                                                                                                    Participant

                                                                                                                                                                      Why not try a more conservative approach. I have read many of people using Golden Milk or slurry of Organic Tumeric.  They do give this to their children since it's just a spice. Also to help her immune system, many servings of ORGANIC vegetables and a couple of fruits per day.  There are a lot of phytonutrients in vegetables that could assist her immune system to beat the cancer.  Tomatoes have lycopene that has been shown in some studies to inhibit the spread of cancers.  Broccoli, which has a chemical called Sulferane in it that is currently being studied at places like UOf M for its inhibitory properties against melanoma. Kale which is full of phytonutrients and one of the best vegetables around for health and building a strong immune system.  Lemon zest is being studied for its inhibitory actions against cancer.   This also helps to keep her body in an alkaline state as opposed to an acidic state which is better for your immune system.  I put all those raw veggies with a piece of fruit or berries in a blender and drink it.   YouTube golden milk and Gershon diet. Gives a lot f great info though with gears hong, I would never give a child a coffee enema.  But the diet is great if modified a little. Organic foods are better because it keeps the pesticide load low in her body and the body can work to rid the cancer instead of the pesticides.  Hope this has helped a little.  So sorry that your child has to go through this.  

                                                                                                                                                                       

                                                                                                                                                                      camping_mama
                                                                                                                                                                      Participant

                                                                                                                                                                        thank you for your response.  Yes, I have been giving her curcumin orally for the last few weeks (mixed in smoothies or yogurt).  I am purchasing the more pure I can find available.  I have a family member whose mother was a long time researcher or turmeric in India.  The Curcumin C3 Reduct is even more bio-available, and as an added bonus it is white not yellow!! Everything in my house was getting stained with the yellow curcumin/turmric.  

                                                                                                                                                                        camping_mama
                                                                                                                                                                        Participant

                                                                                                                                                                          thank you for your response.  Yes, I have been giving her curcumin orally for the last few weeks (mixed in smoothies or yogurt).  I am purchasing the more pure I can find available.  I have a family member whose mother was a long time researcher or turmeric in India.  The Curcumin C3 Reduct is even more bio-available, and as an added bonus it is white not yellow!! Everything in my house was getting stained with the yellow curcumin/turmric.  

                                                                                                                                                                          camping_mama
                                                                                                                                                                          Participant

                                                                                                                                                                            thank you for your response.  Yes, I have been giving her curcumin orally for the last few weeks (mixed in smoothies or yogurt).  I am purchasing the more pure I can find available.  I have a family member whose mother was a long time researcher or turmeric in India.  The Curcumin C3 Reduct is even more bio-available, and as an added bonus it is white not yellow!! Everything in my house was getting stained with the yellow curcumin/turmric.  

                                                                                                                                                                            Momrn5
                                                                                                                                                                            Participant

                                                                                                                                                                              Why not try a more conservative approach. I have read many of people using Golden Milk or slurry of Organic Tumeric.  They do give this to their children since it's just a spice. Also to help her immune system, many servings of ORGANIC vegetables and a couple of fruits per day.  There are a lot of phytonutrients in vegetables that could assist her immune system to beat the cancer.  Tomatoes have lycopene that has been shown in some studies to inhibit the spread of cancers.  Broccoli, which has a chemical called Sulferane in it that is currently being studied at places like UOf M for its inhibitory properties against melanoma. Kale which is full of phytonutrients and one of the best vegetables around for health and building a strong immune system.  Lemon zest is being studied for its inhibitory actions against cancer.   This also helps to keep her body in an alkaline state as opposed to an acidic state which is better for your immune system.  I put all those raw veggies with a piece of fruit or berries in a blender and drink it.   YouTube golden milk and Gershon diet. Gives a lot f great info though with gears hong, I would never give a child a coffee enema.  But the diet is great if modified a little. Organic foods are better because it keeps the pesticide load low in her body and the body can work to rid the cancer instead of the pesticides.  Hope this has helped a little.  So sorry that your child has to go through this.  

                                                                                                                                                                               

                                                                                                                                                                              Momrn5
                                                                                                                                                                              Participant

                                                                                                                                                                                Why not try a more conservative approach. I have read many of people using Golden Milk or slurry of Organic Tumeric.  They do give this to their children since it's just a spice. Also to help her immune system, many servings of ORGANIC vegetables and a couple of fruits per day.  There are a lot of phytonutrients in vegetables that could assist her immune system to beat the cancer.  Tomatoes have lycopene that has been shown in some studies to inhibit the spread of cancers.  Broccoli, which has a chemical called Sulferane in it that is currently being studied at places like UOf M for its inhibitory properties against melanoma. Kale which is full of phytonutrients and one of the best vegetables around for health and building a strong immune system.  Lemon zest is being studied for its inhibitory actions against cancer.   This also helps to keep her body in an alkaline state as opposed to an acidic state which is better for your immune system.  I put all those raw veggies with a piece of fruit or berries in a blender and drink it.   YouTube golden milk and Gershon diet. Gives a lot f great info though with gears hong, I would never give a child a coffee enema.  But the diet is great if modified a little. Organic foods are better because it keeps the pesticide load low in her body and the body can work to rid the cancer instead of the pesticides.  Hope this has helped a little.  So sorry that your child has to go through this.  

                                                                                                                                                                                 

                                                                                                                                                                                tcell
                                                                                                                                                                                Participant

                                                                                                                                                                                  I started reading too when I got my diagnosis but the truth I found out was that the field of melanoma treatment and cancer in general is so huge that I would never get sufficient knowledge. What it helps me to do however, to take informed decisions together with my oncologist.

                                                                                                                                                                                  As a father myself I can very well understand this reflex of yours to try and help her on the one hand, on the other hand I feel you are underestimating the danger of doing what you are about to do. There are people with a qualification and certain experience that know what is the best treatment for your daughter. You need to trust them and rely on them, otherwise I suggest you get a second opinion.

                                                                                                                                                                                  As you can see from the thread you got lots of answers from people who have been suffereing from melanoma, some for a long time. None of these people approved of your idea and now you found out yourself that DMSO is not as harmless as you thought. It makes me sad how you attacked one of the forum members above just for giving his honest opinion on things. It seems to me you were expecting everybody to say "Yes, go for it!" and now you are disappointed nobody did it! Why bother post your question if you have answered it already for yourself and decided what to do?

                                                                                                                                                                                  camping_mama
                                                                                                                                                                                  Participant

                                                                                                                                                                                    Hi, thanks for your resonse.  No certainly not expecting people to say "yes, go for it"!!  I am here to learn from the people who I imagine have researched this more than anyone outside of an actual cancer research center.  No one is more motivated  than someone researching for their own life, except perhaps someone researching for their child's life.

                                                                                                                                                                                    I am sorry you felt that my honest and defensive response to the earlier post was an "attack".  It wasn't intended to be, just an honest statement that that post struck me as insensitive and insulting.  I am not and have not done anything yet.  I am trying to gather as much information as possible.  The tone of the post was that I was recklessly jumping into something and was intentionally going to do somethign to harm my own child. 

                                                                                                                                                                                    I know you and the other poster don't know me, but I am perhaps the most careful person possible with my children's health.  And I love this child in a way that is nearly impossible to communicate.  The feeling I got from the post was that I was doing something unsafe: I am simply trying to gather information to do anything and everythign to help my child. 

                                                                                                                                                                                    I do agree in thory with the statement "There are people with a qualification and certain experience that know what is the best treatment for your daughter."  But I am not going to be passive in this fight.  This is her life at stake and I am absolutely unwilling to just sit quietly and just do what I'm told.  That was how she got the unnecessary CT scan that I believe triggered this whole thing in the first place.   

                                                                                                                                                                                     

                                                                                                                                                                                    camping_mama
                                                                                                                                                                                    Participant

                                                                                                                                                                                      Hi, thanks for your resonse.  No certainly not expecting people to say "yes, go for it"!!  I am here to learn from the people who I imagine have researched this more than anyone outside of an actual cancer research center.  No one is more motivated  than someone researching for their own life, except perhaps someone researching for their child's life.

                                                                                                                                                                                      I am sorry you felt that my honest and defensive response to the earlier post was an "attack".  It wasn't intended to be, just an honest statement that that post struck me as insensitive and insulting.  I am not and have not done anything yet.  I am trying to gather as much information as possible.  The tone of the post was that I was recklessly jumping into something and was intentionally going to do somethign to harm my own child. 

                                                                                                                                                                                      I know you and the other poster don't know me, but I am perhaps the most careful person possible with my children's health.  And I love this child in a way that is nearly impossible to communicate.  The feeling I got from the post was that I was doing something unsafe: I am simply trying to gather information to do anything and everythign to help my child. 

                                                                                                                                                                                      I do agree in thory with the statement "There are people with a qualification and certain experience that know what is the best treatment for your daughter."  But I am not going to be passive in this fight.  This is her life at stake and I am absolutely unwilling to just sit quietly and just do what I'm told.  That was how she got the unnecessary CT scan that I believe triggered this whole thing in the first place.   

                                                                                                                                                                                       

                                                                                                                                                                                      camping_mama
                                                                                                                                                                                      Participant

                                                                                                                                                                                        Hi, thanks for your resonse.  No certainly not expecting people to say "yes, go for it"!!  I am here to learn from the people who I imagine have researched this more than anyone outside of an actual cancer research center.  No one is more motivated  than someone researching for their own life, except perhaps someone researching for their child's life.

                                                                                                                                                                                        I am sorry you felt that my honest and defensive response to the earlier post was an "attack".  It wasn't intended to be, just an honest statement that that post struck me as insensitive and insulting.  I am not and have not done anything yet.  I am trying to gather as much information as possible.  The tone of the post was that I was recklessly jumping into something and was intentionally going to do somethign to harm my own child. 

                                                                                                                                                                                        I know you and the other poster don't know me, but I am perhaps the most careful person possible with my children's health.  And I love this child in a way that is nearly impossible to communicate.  The feeling I got from the post was that I was doing something unsafe: I am simply trying to gather information to do anything and everythign to help my child. 

                                                                                                                                                                                        I do agree in thory with the statement "There are people with a qualification and certain experience that know what is the best treatment for your daughter."  But I am not going to be passive in this fight.  This is her life at stake and I am absolutely unwilling to just sit quietly and just do what I'm told.  That was how she got the unnecessary CT scan that I believe triggered this whole thing in the first place.   

                                                                                                                                                                                         

                                                                                                                                                                                        tcell
                                                                                                                                                                                        Participant

                                                                                                                                                                                          I started reading too when I got my diagnosis but the truth I found out was that the field of melanoma treatment and cancer in general is so huge that I would never get sufficient knowledge. What it helps me to do however, to take informed decisions together with my oncologist.

                                                                                                                                                                                          As a father myself I can very well understand this reflex of yours to try and help her on the one hand, on the other hand I feel you are underestimating the danger of doing what you are about to do. There are people with a qualification and certain experience that know what is the best treatment for your daughter. You need to trust them and rely on them, otherwise I suggest you get a second opinion.

                                                                                                                                                                                          As you can see from the thread you got lots of answers from people who have been suffereing from melanoma, some for a long time. None of these people approved of your idea and now you found out yourself that DMSO is not as harmless as you thought. It makes me sad how you attacked one of the forum members above just for giving his honest opinion on things. It seems to me you were expecting everybody to say "Yes, go for it!" and now you are disappointed nobody did it! Why bother post your question if you have answered it already for yourself and decided what to do?

                                                                                                                                                                                          tcell
                                                                                                                                                                                          Participant

                                                                                                                                                                                            I started reading too when I got my diagnosis but the truth I found out was that the field of melanoma treatment and cancer in general is so huge that I would never get sufficient knowledge. What it helps me to do however, to take informed decisions together with my oncologist.

                                                                                                                                                                                            As a father myself I can very well understand this reflex of yours to try and help her on the one hand, on the other hand I feel you are underestimating the danger of doing what you are about to do. There are people with a qualification and certain experience that know what is the best treatment for your daughter. You need to trust them and rely on them, otherwise I suggest you get a second opinion.

                                                                                                                                                                                            As you can see from the thread you got lots of answers from people who have been suffereing from melanoma, some for a long time. None of these people approved of your idea and now you found out yourself that DMSO is not as harmless as you thought. It makes me sad how you attacked one of the forum members above just for giving his honest opinion on things. It seems to me you were expecting everybody to say "Yes, go for it!" and now you are disappointed nobody did it! Why bother post your question if you have answered it already for yourself and decided what to do?

                                                                                                                                                                                          camping_mama
                                                                                                                                                                                          Participant

                                                                                                                                                                                            Sigh.  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2682536/  There is a lot more for me to keep researching, but this is clearly a problem.  Central nervous system toxicity when injected in rats; assumed rsik to children's CNS.  This is injections and DMOS mixed with bone marrow, etc., but still. 🙁

                                                                                                                                                                                            Reading, reading reading….

                                                                                                                                                                                            camping_mama
                                                                                                                                                                                            Participant

                                                                                                                                                                                              Sigh.  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2682536/  There is a lot more for me to keep researching, but this is clearly a problem.  Central nervous system toxicity when injected in rats; assumed rsik to children's CNS.  This is injections and DMOS mixed with bone marrow, etc., but still. 🙁

                                                                                                                                                                                              Reading, reading reading….

                                                                                                                                                                                              camping_mama
                                                                                                                                                                                              Participant

                                                                                                                                                                                                The pathology report for her lymph node biopsy came back negative!!!  To say we are relieved is the understatement of my life.  I know it doesn't mean she is out of the woods, but we are feeling so very much more hopeful.  Sigh. 

                                                                                                                                                                                                  Momrn5
                                                                                                                                                                                                  Participant

                                                                                                                                                                                                    So glad to hear that!   Outcomes are so much better when it doesn't get in the node.  Take a big sigh of relief and give her another hug.  smiley

                                                                                                                                                                                                    Momrn5
                                                                                                                                                                                                    Participant

                                                                                                                                                                                                      So glad to hear that!   Outcomes are so much better when it doesn't get in the node.  Take a big sigh of relief and give her another hug.  smiley

                                                                                                                                                                                                      Momrn5
                                                                                                                                                                                                      Participant

                                                                                                                                                                                                        So glad to hear that!   Outcomes are so much better when it doesn't get in the node.  Take a big sigh of relief and give her another hug.  smiley

                                                                                                                                                                                                        tcell
                                                                                                                                                                                                        Participant

                                                                                                                                                                                                          Great news!

                                                                                                                                                                                                          Very happy for you and hoping the best for your daughter!

                                                                                                                                                                                                          tcell
                                                                                                                                                                                                          Participant

                                                                                                                                                                                                            Great news!

                                                                                                                                                                                                            Very happy for you and hoping the best for your daughter!

                                                                                                                                                                                                            tcell
                                                                                                                                                                                                            Participant

                                                                                                                                                                                                              Great news!

                                                                                                                                                                                                              Very happy for you and hoping the best for your daughter!

                                                                                                                                                                                                              camping_mama
                                                                                                                                                                                                              Participant

                                                                                                                                                                                                                Thank you!!

                                                                                                                                                                                                                camping_mama
                                                                                                                                                                                                                Participant

                                                                                                                                                                                                                  Thank you!!

                                                                                                                                                                                                                  camping_mama
                                                                                                                                                                                                                  Participant

                                                                                                                                                                                                                    Thank you!!

                                                                                                                                                                                                                  camping_mama
                                                                                                                                                                                                                  Participant

                                                                                                                                                                                                                    The pathology report for her lymph node biopsy came back negative!!!  To say we are relieved is the understatement of my life.  I know it doesn't mean she is out of the woods, but we are feeling so very much more hopeful.  Sigh. 

                                                                                                                                                                                                                    camping_mama
                                                                                                                                                                                                                    Participant

                                                                                                                                                                                                                      The pathology report for her lymph node biopsy came back negative!!!  To say we are relieved is the understatement of my life.  I know it doesn't mean she is out of the woods, but we are feeling so very much more hopeful.  Sigh. 

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                                                                                                                                                                                                                  The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

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